@LittleSteps2BXtra How terrible! 😠

I'm so angry that any patient with ME, anywhere in the world, is being told to try graded exercise when there's no evidence it helps and there is evidence that it could make a patient worse.

For anyone who is new to this topic here is an 8 page summary document - from the Science for ME forum - about the issues with the PACE trial:

https://www.s4me.info/docs/PaceBriefing3.pdf

#MEcfs #MEAwareness #POTS #LongCovid #PostCovid #PEM

"Australia's clinical guidelines for treating ME/CFS are also "20 years out of date", Professor Marshall-Gradisnik says.

While guidelines in the United States and Britain no longer recommend interventions such as graded exercise and cognitive behavioural therapy, Australia's guidelines do."
👀
#MECFS #MeAwareness

"Anyone can help by learning about ME/CFS, for example here: https://me-pedia.org, or over on Sammy's Instagram: https://instagram.com/m.e_and_more, by supporting research and advocacy organizations like https://instagram.com/openmedf and https://instagram.com/meactnet, and engaging with our content to help get as many survey participants as possible!

#ChronicFatigueSyndrome #MyalgicEncephalomyelitisAwareness #MECFSAwareness #CFSAwareness #MEAwareness #LongCovid #LongCovidAwareness

5/5

#CRASH-Symposium im Künstlerhaus Wien: #MECFS sichtbar machen #MEawareness

https://coronawissen.com/2023/08/19/crash-symposium-im-kunstlerhaus-wien-mecfs-sichtbar-machen/

From the ME Association:

"Do you have experience of severe or very severe ME/CFS?"

"During Severe ME Week 2023 (7th – 13th August), we’d like to share your stories, poems, and quotes about being severely or very-severely affected by this disease …

Together we can raise awareness about how devastating this disease can be …"

https://meassociation.org.uk/2023/07/do-you-have-experience-of-severe-or-very-severe-me-cfs/

#MEcfs #PwME #SevereME #MyalgicEncephalomyelitis #MEAwareness

On May 12th, #MEAction and Body Politic set up 300 cots, each with a blanket and a personalized pillowcase, on the grassy area at the base of the Washington Monument for Millions Missing 2023. It created a powerful image.

#MEAction has created a 20 minute video slideshow with photos of these pillowcases:

https://www.youtube.com/watch?v=4i2jgmRynhU

[What is ME/CFS? See https://www.cdc.gov/me-cfs/about/index.html ]

#MEcfs #LongCovid #PwME #PwLC #MillionsMissing #PillowStory #MEAwareness #MyalgicEncephalomyelitis

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🕊️

This clip describes what #pwME might experience running on adrenaline preceding PEM/PESE/PENE.

From a short animation directed by Alexandra Hohner.

Full clip: http://youtu.be/l1ufdoV5vYY

#MyalgicEncephalomyelitis
#MillionsMissing
#MEAwareness
#MECFS

"Tullaghan woman has been living with ME for 26 years"

"May is ME awareness month which shines the spotlight on a common but incurable condition"

Article (paywall): https://www.independent.ie/regionals/sligo/news/tullaghan-woman-has-been-living-with-me-for-26-years/a195483255.html

What is ME? - https://www.meaction.net/learn/what-is-me/

#MEcfs #PwME #MEAwareness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

New blog post: Chronic Fatigue Syndrome: How Does It Affect Someone?
#mecfs #chronicillness #meawareness #worldmeday #medium @medium
https://medium.com/@charlotterclark/chronic-fatigue-syndrome-how-does-it-affect-someone-1e2fe6ec7770

https://www.meresearch.org.uk/endothelial-dysfunction-in-me-cfs/
#MEAwareness

A short video (just over 2 minutes) that describes ME/CFS :

https://www.youtube.com/watch?v=X6f4zCe2ZtA

Video by @brokenbattery

#MEcfs #PwME #MEAwareness #MyalgicE

Please boost to help educate anyone who still thinks ME/CFS means "tired all the time" Thanks❤️